When the Cure Is Worse Than the Disease – The New York Times

Katie Tulley suffers from an incurable bladder disorder so painful that it feels “like tearing skin off your arm and pouring acid on it, 24/7,” she said. On scans, the organ looks like an open sore.

Ms. Tulley, a 37-year-old Louisianan who used to work with autistic children, manages her pain with a fentanyl patch. The opioid gives her a few precious hours out of bed to help her parents, do online volunteer work and occasionally leave home for something other than a medical visit. “I don’t get a euphoric feeling,” she said, noting that she has lowered her dose to avoid feeling woozy and impaired.

Now, because of legal concerns about overdose risk, her doctors have considered stopping her medication, even though she has never misused it. And so, when she recently discovered a suspicious lump in her belly, she found herself hoping it was cancer. “I shouldn’t ‘want’ cancer,” she said. “But at this point it’s the only way to be treated” for her pain.

As many as 18 million patients rely on opioids to treat long-term pain that is intractable but not necessarily associated with terminal illness. In 2016, seeking to curb opioid misuse, the Centers for Disease Control and Prevention introduced guidelines outlining a maximum safe dosage and strongly urging doctors to avoid prescribing for chronic pain unless death is imminent. The guidelines were supposed to be voluntary and apply only to chronic pain patients seeing general practitioners. Instead, they have been widely seen by doctors as mandatory.

As a result, thousands of pain medication recipients have had their doses reduced or eliminated. But this attempt to save people from addiction is leaving many patients in perpetual pain — and thus inadvertently ruining, or even ending, lives.

A Veterans Health Administration study found alarming rates of suicidal acts “following discontinuation of opioid therapy.” Human Rights Watch recently released a report detailing the struggles of chronic pain patients in the United States to find relief and care as a result of government efforts to reduce prescriptions.

Prescribing outside the C.D.C. guidelines can lead to scrutiny by medical boards and even the Drug Enforcement Administration — and the result has been that many doctors have either quit prescribing entirely or tapered patients’ doses to fit the guidelines. According to a 2017 Boston Globe survey, nearly 70 percent of family and internal medicine doctors nationwide reported having reduced their prescribing in the previous two years — and nearly 10 percent reported stopping prescribing pain medication entirely.

The State of Oregon is considering a proposal that would require that all Medicaid patients with certain forms of chronic pain be forced off opioids. But not all patients can manage without opioids and some — whether because of metabolic or genetic differences, or tolerance from long-term use — will always need higher doses than the C.D.C. recommends.

Jay Lawrence, a former truck driver, is a case in point. When his doctor refused to continue his medication in early 2017 — even though he had severe pain from spinal cord injuries and was not addicted — he told his wife that he’d had enough. In a park where they’d recently renewed their wedding vows, he fatally shot himself in the chest while she held his hand.

By working to reduce prescribing, government regulators, insurers, law enforcement officials, legislators and other policymakers have ignored the genuine dangers of leaving people in agony, including suicide and increased risk for heart attacks and strokes. And with the Trump administration having pledged to cut the manufacturing of opioids by pharmaceutical companies by an additional 10 percent, even more patients are at risk.

To be sure, opioids have been overprescribed. A Johns Hopkins review of six studies found that over two-thirds of patients reported having unused pills. And for many people, the pain killers either aren’t effective or do more harm than good. But while medical opioid use has fallen by nearly one-third since peaking around 2011 — and deaths associated with prescription opioids have stabilized — overall opioid overdose fatalities have recently hit a high as more potent, illegally manufactured opioids hit the streets.

Officials with the Centers for Disease Control admit that they do not specifically track suicides by patients who have lost medical access to pain relievers, so we don’t really know how many people are killing themselves because they can’t live with their pain.

But there is much anecdotal evidence that chronic pain drives patients to suicidal thoughts. Karen King, for example, says she has had four hospitalizations because of suicidal thoughts or attempts in the past year alone. She suffers chronic pain from a broken neck. When her doctor cut her medication, she had to close the quilt store she owned in Massachusetts. Without medication, she couldn’t stand or carry bolts of fabric. “It broke my heart,” she said.

Jeff Geurin is another example. He was a cryptologic linguist in the Air Force when he was wounded in a parachute jump accident. He retrained as a surgical technician after a medical discharge from the military in 2008. Last year, his doctor ceased his medication, leaving him with such intense back pain that he had “plans made” for suicide, before he found a new doctor.

In the rush to reduce opioid misuse, it is easy to forget that millions of people have safely taken these drugs for years. Data show that less than 8 percent of chronic pain patients become addicted, according to a study that has the director of the National Institute on Drug Abuse as a co-writer. And overwhelmingly, prescription opioid addiction doesn’t begin with a doctor’s prescription: About 80 percent of people who start misusing these drugs are getting them from family, friends and other people’s medicine cabinets — not from legitimate pain treatment.

It is true that long-term, high-dose opioid use is associated with increased overdose risk. But proponents for cutting pain medication use often fail to recognize that simply reducing or ending pain pill prescriptions can be risky, too.

A 2017 study of about 500 veterans who were forced to taper found that 9 percent became suicidal and 2 percent actually acted on those thoughts. Other research recently presented at a major health services conference showed that 30 percent of those who were made to taper completely were dead within six months, though the data didn’t show the cause of death.

Dr. Stefan Kertesz, a professor of medicine at the University of Alabama at Birmingham, has publicly noted that there is no compelling body of evidence showing that forced tapering is consistently helpful, and that it is clearly associated with harm in some cases.

Even people with terminal cancer can be affected. Dr. Barbara McAneny, the president of the American Medical Association, recently described a close call in one of her own patients. He had prostate cancer that infiltrated his bones — and attempted suicide after being turned away at the pharmacy because his dose was outside the guidelines.

After years of complacency, doctors are finally starting to fight back. Dr. McAneny cited her experience to support a resolution, subsequently passed by the medical association, that warns against “misapplication” of the guidelines. The group stresses that dose alone is not a reason for insurers or pharmacists to block access — and that doctors with good clinical reasons for variance should not be investigated or prosecuted.

A parallel effort by a group of over 300 medical professionals, co-led by Dr. Kertesz and signed on to by three former United States drug czars, calls on the C.D.C. to make a “bold clarification” by stating that its guidelines do not require that chronic pain patients who are dependent on opioids have their dosages tapered. Another large group of physicians — including some strong supporters of the guidelines as written — recently published a journal article calling involuntary tapers a “large-scale humanitarian issue” and demanding that they be prohibited or at least minimized.

Paradoxically, there is a growing medical consensus that patients who are addicted to their pain pills shouldn’t be forced to taper their dosages. The safest treatment for opioid addiction is maintenance with an appropriate opioid: For addiction, the opioids methadone and buprenorphine are the only treatments proved to cut the death rate from overdose by 50 percent or more.

“We have less mercy for people who have chronic pain and are on chronic opioids than we do for somebody who’s using heroin in the streets right now,” said Dr. Kertesz.

Both groups deserve more compassion, including a safe legal harbor for high-dose prescribing for patients who truly need it — as well as for their doctors. Attempting to reduce overdose risk by raising the odds of suicide is both cruel and senseless.